Presentation on theme: "Patient Participation in Research – a patient perspective"— Presentation transcript:
1 Patient Participation in Research – a patient perspective Hilary JonesSUCCESS group volunteerUniversity of Wolverhampton – 19th September 2014“Sharing Experience to Inspire Excellence”
2 AimsDemonstrate practical areas in which patients and public can contribute to health researchShow how we can help shape outcomes at each stage in the research processIllustrate how powerful it can be when professionals and public work togetherGive specific examples and case studies
3 Involving Patients and Public in Research: Why Bother? Faculty ethosStatutory and professional requirementsCombined perspectives – holisticacademic + health professional + patientBetter understanding of patient experience- targeted, clearly focused research aims- integrated design and methodology- rounded, robust and relevant research outcomes- higher quality research- potentially greater relevance or application
4 Practical ways in which we contribute to research: How? Formal staff meetings - repsGroup discussion - projects1-2-1 phone callsComments/feedback byPresentations to postgrad students
5 Practical ways in which we contribute to research: What? Faculty CommitteesResearch and Enterprise Committee – EOIsEthicsCourse Management CommitteesInduction DaysService User Co-applicant – bidsAdvisory Groups, Steering GroupsPatient volunteer groupsSUCCESSRESULT
6 Co-ordinator: Rupy Pandaal SUCCESSService Users and Carers Contributing to Educating Students for ServicesHow we contribute to the Faculty of Education Heath and WellbeingStudent selection and admissionTeaching and assessmentsQuality assuranceParticipation in research activitiesCo-ordinator: Rupy Pandaal
7 RESULTResearch Enabling Serviceuser and University Learning Together Mission statement: to promote the interests of ordinary people in the involvement of research throughout the West Midlands Chair: Dr Hilary Paniagua
8 Example 1: Organ Donation Group discussion of Abstract – Nov 2012eg how to approach the family, ‘family care’;feedback incorporated, research title changedSecond stage – full application – Sept 2014two service users to join Advisory Group(five meetings over three years)
9 Example 2 : Delayed prescribing of antibiotics Aug 2012 – RESULT group introduced to research ideaDec – Group discussed research proposal with Prof;useful ‘nuggets’ and a named SU/C co-applicant electedApr 2013 – Co-applicants gave feedback to draft proposalMay – Bid submitted to RfPBJul – Co-applicant reported back to RESULT membersSept – Bid unsuccessful; resubmitted to PRUK and shortlistedDec – RESULT team encouraged a third submissionOngoing consultation if successfuleg help identify key questions, questionnaire design
10 Example 3: Healthy Living Pharmacies Join Steering Group – May 2014Comment on project proposals – June 2014 egStudy protocolStudy letter of invitation – eg layout, instructionsPatient information leaflet – eg toneConsent formCurrently with Ethics
11 What do I contribute?Service User experience and perspectiveQuestionsHonestyWhat do I gain?ConfidenceNew skills, renewed skillsSense of joy, of making a difference
12 So what do the academics say? Involving the patient and public voice can produce:Research that is more meaningful in practiceLearning together that is mutually rewardingUseful insights from a different perspectiveChallenges to methodology that can sort out problems which might have arisen laterValued members of the wider research team!
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